A letter to Herts County Council (HCC)

Please excuse the ubiquitous letter however so many people and so many departments have factored into our time in Hertfordshire that I can’t particularly address it to one individual. That would be unfair and unrealistic.

I have had quite an emotional week with one thing or another but what has pretty much tipped me over the edge in terms of how I feel is the inability of you, HCC to make my life that little bit simpler. Not just my life, my son Jude’s life. It’s a silly little thing really, just a school transfer. We have been waiting for a date since the summer and between August when Jude was initially offered the chance of an early transfer to a school I have always wanted him to attend and now, I have probably spoken to around thirty people, all of whom have attempted to transfer me onto another department/team/individual. Only today (15th November 2016), after all these months have I finally located the person in charge of our “case”. A case. My son’s educational and social needs are lumped under that rather arduous and indeterminable word void of any personable or thoughtful meaning.

The inexplicable enormity of this one silly little issue of a date for my sons transfer has brought back a wave of bad memories relating to the constant battle I have had with you to ensure my son receives the therapy and care he needs, the care that only professionals and specialists can provide. Specialists such as Physiotherapists, Occupational Therapists, Speech Therapists and Music Therapists, all of whom he was refused access to which was strange because in our previous county Jude had received all of the above, without question or issue on a weekly basis. All of which he was refused despite the fact they were mentioned as beneficial and in some cases necessary within his (then) Statement of Educational Need.

I feel like you have most ardently failed me in my role as a mother. I appreciate that responsibility for Jude ultimately falls on my shoulders however without support, I can only do so much. Let’s focus on what I consider the main two professional areas necessary for my son:

Firstly, Physiotherapy. Jude had an assessment when he was about five however, it was deemed impossible to offer him any sessions because he could already walk. Yes, walk. The benchmark for being physically ay-ok by HCC is the ability to successfully get from Point A to Point B on your feet. Needless to say this denial was refuted however, it is evidently a pointless fight. I actually had a row with one of the “main” Physiotherapy team members because she felt I was unreasonable insisting on Jude having this type of support. How dare I expect more than a basic movement for my son! At the age of now almost eleven he cannot even climb a climbing frame and prefers to hold onto a buggy or take a hand when walking through town as he is still very wobbly.

Occupational Therapy – Jude was refused this on the grounds that his concentration was not good enough which is a pretty harsh judgement for a five year old child with learning disabilities. This is one area in which I feel I have failed Jude the most. At his current stage, he is still unable to do up a zip, button up his coat or put his shoes on himself. He can hold a pencil and write his name fairly legibly but his finger strength is incredibly weak. Yes, I know I could do a lot more to help these notably standard activities however attempting to fit Occupational Therapy sessions into an already busy household is unrealistic. The Occupational Therapist we used to see in our previous county used to give Jude weekly exercises and it is this spoon feeding of information and guidance that a mother like me needs. She used to also claim how great a focused session was for Jude’s concentration as sitting and working on an activity does not come naturally to Jude; it really made a difference but you didn’t listen.

Because of the trillions of phone calls I have had to chase up, the referrals we have waited patiently for, the paperwork I’ve ploughed through, the transferring through your complex web of telephone centres, the hospital assessments, the let downs and the baffling amount of people I have to speak to just to find out when my son will be moving schools, I feel emotionally broken. I feel I have failed my son and I blame you largely for this sensitivity. I now have this overwhelming guilt and anxiety that I could have done better. Why couldn’t I have just listed down all the people involved in one assessment, why didn’t I jot down this number or that number because now we have to start again and I’ve wasted another week calling back and forth, why didn’t I fight the refusal for this or that therapy, why didn’t I ask around for contacts and possible support networks?! Largely because I was lost and looking for your social care department to guide me but this never happened.

When we moved to Hertfordshire it was literally a few months before Jude was starting school. I assumed, with his Statement of Educational Need making reference to his SEVERE learning disabilities, his need for someone with him to change his pull ups and all the other problems he then faced that we would be given the option of a special needs (SEN) school. I even visited a few and chose my favourite however, whilst on the phone to…I have no idea because I spoke to so many different people…I was told that there was no way we could have a SEN school because Jude was “not known” to the system. I thought that was why he had a Statement. I argued my case however, because of the short time frame I was told to choose a mainstream school there and then on the phone. Luckily, I know the area so chose what I felt was best however, is that really a way to treat a mother trying to find the best provision for her disabled son? I was told I could take it to panel however this is a long process and Jude would lose any mainstream place in the meantime. I was basically backed into a corner and as such, Jude spent his reception year feeling inadequate amongst his peers and barely involving himself in class activities. I spent a year feeling awkward in the playground at pick up and drop off time. The teaching team spent a year attempting to involve Jude in group class work knowing it was entirely futile because he had no idea what they were on about. We were lucky he had fantastic Learning Support Assistants however, again these were only part funded by you despite the fact Jude was incredibly vulnerable, unable to sit in class and still in pull ups. You thought it was ok for him to spend an entire afternoon each day unsupported but thankfully his school thought otherwise and financed his carer partly themselves.

Anyway, I could write a letter a hundred pages long – in the ten and a half years Jude has been alive, he has spent over half of these in Hertfordshire so we have many tales to tell. However, I will leave it at this for now. I just wanted to let you know, HCC, that you have failed me as a mother and as such you have failed my family and in particular my son, Jude.

I just wonder how confident, fantastic, articulate, outgoing, popular, social, fun and most importantly happy Jude would be if things had been different.

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Sarah on Nov 16 2016

I’m so sorry you have to put up with all this bull Alice. It’s so not right. Have you been in touch with contact a family for support locally? Xx

admin on Nov 16 2016

Hi Sarah. Yes, I have a while ago but I could re-contact them. You know when you’re just so sick of researching things and contacting people? I’ve kind of hit that wall and think I just need to survive for a while. I look forward to hearing a response from the council, will let everyone know what they say. Thank you for your comment. A x

kimberly on Nov 16 2016

Hi Alice,
You are doing an incredible job. Not only caring and fighting for Jude, but fielding all the crazy admin and writing this blog too! I have filmed with quite a lot of children and families living with learning and physical disabilities, and although I have no personal family experience of it, I have spent time with people in your situation. It’s relentless, tough and ridiculous. But your little man is amazing, and he WILL be fine. Mostly thanks to his Mummy and family striving for the best for him. Stay strong and keep going. And take any respite you can when it’s offered! Kimberly x #FamilyFun

Allison Miller on Nov 17 2016

ahhh whats happening to you and Jude makes me so angry. we had the same thing with Charlie. Cause he wasnt in the system ( cause we moved here from Australia) there was no placement for him. Even though the dept in Aus and his old school and therapists provided every conceivable piece of info for them even offered up phone consults and skype meetings even though that would have to occur in the middle of the night in Oz! . The phone calls about drove me insane. In the end we contacted a lawyer. Once we bought this into the conversation (not the actual lawyer mind you just the mention of one!) things changed. I also sent a detailed email outlining the SEN depts mission statement ( available on their website). It was glaringly obvs that in no way were they adhering to this mission statement…..mentioning this also seemed to get them to listen.
We are in Cheshire and the battle we had and what we were put through is an absolute disgrace. It took us 12 months to get Charlie a placement, thats 12 months he was not in school. could you imagine what would happen if a “mainstream” child was denied schooling for a year.
He is now in a fantastic school and we have just gone through the process of finding him a high school for next year. Funny enough that process was met with a great amount of consideration , care and open lines of communication….Ha! I think when Charlies name gets typed into the data base a siren blares and a warning about his two mums appears!!!. But hey they can think Im a nutty pushy bitch if it helps!.
But Im hearing you ….its sooo exhausting,frustrating, humiliating and depressing. No one but another mum of a Jude or Charlie gets it. Feeling so powerless can quickly turn into hopelessness.
Ill be crossing everything for you, and hoping that just one person with an ounce of compassion ( and a huge amount of common sense) sees your email or takes your call.
Big love to you and your beautiful brood.
Allison

admin on Nov 17 2016

Thank you. I can’t believe your son was out of school for 12 months, that’s horrendous. Not easy for you having him home 24/7 as well.
I think I’m just very tired and have lost my fight. I’ll await a response from the powers within Hertfordshire county council and will let everyone know what happens. All the best to you and your family and thank you again for your comments 🙂 Alice x

twotinyhands on Nov 17 2016

That’s crazy. I can’t really relate to the situation but can’t believe that you’ve been messed and passed around like this. It’s lucky Jude has you fighting his corner and I wish you could have had better support over the last few years in your new county. Wishing you well for the future X
Thanks for linking up to #familyfun

tammymum on Nov 18 2016

Oh lovey my heart goes out to you. Life is hard enough without having to battle councils everyday. I say this from experience. I sincerely hope you get the help you need soon and the transfer date. Thank you so much for sharing his at #familyfun xx

ohmummymia on Nov 22 2016

I hope you will get a help because you deserve it. It’s so unfair what happen to you:/ I forgot that on our blogs we can read such a sad stories as well 🙁
#FriYAYLinky

admin on Nov 23 2016

Sorry you found it sad, I guess I just wanted to express myself as strongly as possible to the people at Herts CC and tell them how I genuinely feel. I’m awaiting their reply…A x

joysofamum on Nov 24 2016

Hello. I hope you and your boy are getting the support you deserve. It’s mad how councils can’t communicate with each other. #nofilter

Laura on Nov 24 2016

Firstly, thank you so much for sharing this post with us on the #FriYAYLinky. I’m so sorry you have been made to feel like this. We as mothers feel guilty from the off as it is and I can only imagine how much this has weighed on your shoulders – it shouldn’t do but it’s just how we are wired. I’m so sorry the support hasn’t been there and this seems to be a pretty common occurrence in the UK which is totally unacceptable. People just don’t seem to care enough to actually help. If I was that first person you spoke to I would have dealt with your ‘case’ through to a point you were happy, yet most people just want to pass the buck and not do any actual work. My friend was left without a wheel chair for her daughter for 4 months so she was house bound and could only leave her home when her husband was home to carry her severely disabled 6 year old daughter around the shops or wherever, it makes me sad how parents are left to battle alone and it’s only small charities and help groups that actually seem to care and provide any help. I don’t know what to say really but I’m just so sorry you or anyone else has to feel like this and I really hope it strikes a chord with someone at HCC and they improve their services at the very least. Despite all this though, I’m sure your gorgeous boy is happy and thinks the absolute world of his caring amazing mother xxx

admin on Nov 24 2016

Ahh thank you Laura. I got a reply today from the Director of Children’s Services which was apologetic but not massively overflowing with ways of rectifying the situation. Maybe I’m not looking at it positively but there wasn’t a lot to it. Needless to say I’ll be publishing sections of it on my blog as so many people have messaged me to make sure I’ll let them all know what the response is…
Thanks again x

The Unsung Mum on Nov 25 2016

Alice, you already know that i love this and it makes me so sad and angry that the help you need you have to fight to get!! You are such a amazing mum highlighting the councils failings and i hope that one day they may finally listen and actually be helpful. Thanks so much for linking up. #NoFilter

admin on Nov 26 2016

Thank you. I had a letter response from them this week so hopefully it has opened a few eyes in the various departments x

andanothertenthings on Nov 25 2016

Wow, what a battle you’ve had/ continue to have. It shouldn’t have to be so hard to get what is right for your child. I hope the council read this. Thanks for linking up to #nofilter

admin on Nov 26 2016

Thank you. I received a letter this week and it’s being passed around various departments so fingers crossed it will make a bit of a difference x

Rainbows are too beautiful on Dec 9 2016

Alice, this is simply awful. Keep us updated on any progress for Jude. Thanks so much for sharing this personal account with us on #spectrumsunday as it may help others feel they are not alone in these struggles xxx